"What It Takes To Embrace the Life He Has " By Chris B

You Thought Strength Was Defiance

Hello, Dear Reader! Welcome to our new Carer Mentor community members! I’m Victoria.

If you’re new here, you can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

I’m on a mission to raise awareness of the struggles caregivers face today and the hidden crisis of caregiving. These days, caregiving is not confined to the emotional turmoil of hands-on care. Carers are the glue and communication bridge in fragmented healthcare systems. We’re a buffer and the translator of needs.

It's an extreme challenge—the acts of caregiving and orchestrating all the connecting elements. We are the orchestra, the sheet music, and all the instruments. We are the conductor, but we have no baton.

Equally essential to its mission, the Carer Mentor website publication offers heartfelt empathy for caregivers and serves as a hub for practical tools, resources, and expert insights. I seek out community, build collaborations, and curate anthologies so that we can network and offer mutual support.

Explore the anthologies, and you’ll find others. You’re not alone. The website is a portal to others and aims to build hope.

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Letters from a Caregiver.

“Letters from a Caregiver” is a weekly article where a caregiver offers wisdom, compassion, and hope to their younger self. No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!

There are two previous seasons of Twenty-Two Letters.

This Spring Season so far

1. “Misunderstood, and everyone has an opinion,” By Victoria

Today’s letter is by Chris B

I met Chris in October 2025. I recommend reading his poems, e.g. Happy Hands, A Caregiver’s Poem and See, A Caregiver’s Poem…

Chris has a gift for communicating his experiences, his love for Bray Bray, and his wife, Melanie, through his poetry. It’s beautiful to see and read about his family, and his pickleball wins!

Chris builds community and easily engages with those he meets, whether it’s around caregiving or his gift for poetry, or both!

No caregiving experience is easy. Even when you see the big, beautiful smiles of Chris, Melanie and Bray Bray, I know the sleepless nights they have when Bray Bray’s been ill, or the struggle they’ve had getting the CPAP machine.

Thanks to Chris for sharing this letter to his younger self with us. He’s gifting us the magic that is Bray Bray, the vulnerable yet powerful mindset shift that he underwent and insights into how he approaches life today. (No spoilers here!)

Author’s Bio: Chris B. is an award-winning published poet, caregiver, and Dad to his son Brayden (Bray Bray). When he’s not writing, caregiving, or working, you can find Chris on the pickleball and beach volleyball courts of Long Island, NY, where he resides with his wife Melanie and Bray Bray. Chris is very active on Substack and invites you to follow along as he shares his life adventures as the working parent of a child with many needs, whose enduring smile lights up the world: Chris B. Writes

Bray Bray and Chris B.

What It Takes To Embrace the Life He Has

Dear Chris,

You keep replaying her words over and over again in your head. Partially because she had terrible bedside manner, but also because you just weren’t ready to hear it. I mean, how could you be?

Don’t get me wrong. You are very grateful that the neurologist correctly identified Bray Bray’s head motions as a baby form of epilepsy called Infantile Spasms. And of course, after those seven heartbreaking days in the hospital when he was just 5 and a half months old, you were so happy to have him home as the seizures lessened in frequency and then disappeared like magic.

Of course, like all magic, it’s tricky. And when it comes to how a doctor can essentially save his life so eloquently and then talk to you so flippantly, well, it’s complicated.

As you read this, Bray Bray is 9 months old and declared seizure-free from the Infantile Spasms. Following the hospital visit, you and Melanie have spent every day and night for the past 3 months on pins and needles while injecting Bray Bray with actual needles of ACTH— the powerful hormone medication that stopped the seizures in its tracks.

Your relationship with ACTH is tricky to say the least— mixing the ingredients like you are a chemist who never took chemistry, loading it up into the syringe, and administering to your 6, 7, 8-month-old Brave Angel while praying that the medication you inject into his legs continues to allow his brain to heal.

Bray Bray in 2015

The good news is that the neurologist is happy with the latest EEG results, and it looks like Bray Bray is seizure-free. Spoiler alert: He will remain that way for the next nine years. When they do come back at 10 and a half years old, that will be my burden to bear, not yours.

For now, you can resume the developmental therapies you originally were planning to start before the Infantile Spasms took hold. You saw the early signs of milestones not being met, but little did you know that there were these underlying factors until the seizures waved their big red flags, one involuntary head motion at a time.

The bad news is that you just had a conversation that will shape the next few years of your life and nearly destroy your mental well-being. The neurologist just couldn’t let us have the win—she had to add the most heart-wrenching caveat of caveats.

“Your son will never be normal,” is the gist of what she said, as she went into statistics and jargon, delivering the prognosis so cold, so calculating, so… permanent.

As I mentioned, you were not ready to hear it. And honestly, I applaud you for how you managed to hold back your fury in that moment. You didn’t lash out at her or unleash a tirade on her. Instead, you do what you’ve always done, what the underdog always does – take the punch, then come back with all the well-meaning defiance you have in your heart. You leave the doctor’s office, carrying Brayden to the car, along with this impossible burden you now have on your shoulders, to prove her wrong.

For the next few months, you will barely sleep because of this conversation. You do your research, you line up all the therapists to come to the house for early intervention services—21 sessions per week across 6 days per week, to be exact. Physical therapy, Speech therapy, Occupational therapy, early Special Education services, Vision therapy, Music therapy. You also take him to Swim class on his one day off from therapy.

You and Melanie do it all, and document it all: the progress, the therapists’ notes, the suggestions for sensory toys and standers and gait trainers. You turn your house into a sensory gym with everything any therapist needs to help Bray Bray along the way.

And deep down, you know you want to prove her wrong. You are thinking about the video you’ll show the neurologist when Brayden talks for the first time and says, “Daddy,” delayed as it may be. You can’t wait to show her the video of him taking his first steps, as he looks up at you, smiles, and reaches for your outstretched arms.

You will fight and scratch and claw.

And honestly, you will do everything right for him.

And then, it will happen.

Not another conversation with her, but instead, the conversation you need to have with yourself.

This conversation is long overdue. You’ve been working so hard and stretching yourself so thin while taking care of Bray Bray, you’ve forgotten to take care of yourself.

You never let yourself process everything that happened, not to him, but to you.

You never envisioned that this is what parenting would look like for you, I mean, how could you?

But now, it’s time.

It’s time for you to do something that I will forever be grateful for.

You need to come to grips with the reality of the situation.

You need to get over how she delivered that news to you so terribly at the absolute worst time— and forgive her.

You need to grieve the life Bray Bray might have had… and embrace the life he does have.

Chris, I promise you. Once you do this, once you fully accept that his path doesn’t have to hit every milestone to still be fulfilling, you will be able to let it all go— all the pain you never fully addressed, all the questions about faith, all the somber undertones you’ve been feeling.

You, Melanie, and Bray Bray will live an adventurous life, even if it’s in his wheelchair. And one day, you’ll see, his transcendent smile will change the world. Like I said, magic is tricky.

For now, you will be defiant because you just left the doctor’s office and heard what you might have already suspected but didn’t know how to process. You aren’t ready yet.

But when you are, I’ll be here on the other side, and I wrote this poem for you. Don’t open it until you are truly ready. You’ll know when.

You Thought Strength Was Defiance

You thought strength was defiance.
You thought love meant holding the flood back
with your bare hands.

But one day, a boy named Brayden—
you will call him Bray Bray—
will change everything.

~

He will not speak in words,
but in smiles that disarm
every wall you’ve built.

He will teach you this hard truth quietly:
strength is not in the holding—
it’s in the letting go.

~

You will sit in hospital rooms
that evoke fear but reveal hope.
Monitors will hum lullabies of uncertainty.

You’ll learn new languages:
Infantile Spasms. ACTH. EEG.
Eventually, GNAI1.

Each one a storm forecast.
Each one a reminder
that your compass must now follow his light.

And through it all—he will smile.
A smile that dares the darkness to stay.
A smile that says, “I am here, and that is enough.”

~

You’ll remember the film Winter’s Tale
and how it whispered,
“Some souls are born to save others.”

You won’t understand it then.
But later, holding your son’s fragile, fighting frame,
you’ll know this:
He was born to be your miracle.

~

There will be days when missed milestones
feel like relentless hammers to the head—
first words that never come,
first steps that never fall forward,
a future you can’t quite picture.

And you will hurt like hell.

But listen closely—
because in that ache,
you’ll hear something sacred:
your own awakening.

~

You’ll learn that love is not a checklist.
It is breath shared in silence.
It is laughter on hard days.
It is the music he makes—
drumming along to the beat on good days.
And there will be hundreds of good days.

It is the moment you realize
that while you’re holding his hand,
he’s been holding yours all along,
guiding you home to yourself.

~

Know this, Chris:
he will call you Dad in his own way,
even if he never speaks the word aloud.

And that will be enough.

~

Ten years from now, I will thank you—
for being self-aware enough to tremble,
for choosing presence over perfection,
for allowing the breaking
to become your rebirth.

You thought you were strong.
And you were.

But strength, you’ll learn,
isn’t made of steel.

It’s made of surrender.

It’s made of softness.

It’s made of his pure, persistent smile,
which keeps saving us,
through time and space,
over and over again.

~

I’ll see you on the other side of the storm,
Chris

Bray Bray in 2026

Three Rapid Questions

1. Describe one thing you do to move through fear or uncertainty during caregiving.

   I pause long enough to remember how blessed I am that Bray Bray is still with us, letting gratitude interrupt the spiral. I then to my favorite music playlists, which always helps me change the rhythm of these moments and reset my nervous system.

2. Thinking of someone you admire/respect, name three of their standout qualities/characteristics

   Someone I truly admire is Bray Bray’s music therapist Alisha. She is a huge part of our lives and the way that Bray Bray responds to her is unlike anything else. The three qualities about Alisha that I admire most are:

   • Her passion for helping others.

   • Her presence, even when times are hard.

   • Her thoughtful, selfless nature.

3. What’s one quote/movie/book that’s inspired you?

   By far, the movie that has inspired me the most is Winter’s Tale, which I referenced in the poem I wrote to my younger self as part of the above letter. The overall theme of the movie is that some people were born to be other people’s miracles, and it isn’t always who you think it is. I say this all the time: Bray Bray was born to be our miracle. Even though he can’t talk, his smile lights up every room he’s in. His presence simply makes everyone around him better, and you can just feel his positive energy when you are around him

Prompt for discussion:

What does it mean to you to truly let go and be present, to live in the moment without the baggage of the past, or the worries of the future?

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